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What to do when people say ‘I have Crohn’s too!’

When you feel alone with your illness, there’s often nothing better than speaking to someone who gets it. But Crohn’s still is a relatively rare disease; meaning the chances of you knowing many, or indeed any people with it is rare. So when someone does say ‘oh I have that too!’ we instantly feel a bond. But people being aware of the disease or having a connection to it isn’t always a good thing. Let’s discuss the different answers you might receive when you say you’ve got Crohn’s disease.

What to do when people say ‘I thought I had that but..’

One variation of this is when people say ‘oh I thought I had that but I don’t.’ I’m not sure what people expect you to do in this situation (congratulate them on a clear colon?) but what I find most infuriating is when people end the sentence with ‘but I had the blood test and I don’t have it.’

It may well be a UK thing but many people aren’t given full investigations when they first present with symptoms; leading doctors to diagnose ‘IBS’ after just a quick round of blood tests. Of course, we know inflammatory markers in our blood can give a clue to Crohn’s disease; but similarly, it’s not a diagnostic tool and many patients report being in a flare with perfect blood tests. I have lost count of the people who have told me ‘I had the Crohn’s blood test‘-in other words, their inflammation markers came back normal- and therefore think everything is fine. I feel like a broken record when I reply there’s no such thing as a ‘Crohn’s blood test’.

The fact is that most people are really misinformed about Crohn’s and don’t often want to hear it when you point out that the only way to see what’s actually going on with your digestive system is to get a camera and look inside it. Sometimes I’ll explain the diagnostic process; other times I’ll just leave it be.

What to do when people say ‘I have Crohn’s too, well I used to…’

Oh, it was going so well until we hit the second part of that sentence. When people refer to Crohn’s in the past tense it can make our blood boil because we all know that this disease is sticking with us well into the future. I had a variation of this in the strangest of places last month. My son was being baptized and as I was chatting to the vicar and I told him about my Crohn’s disease, he declared ‘me too!’ What were the chances of thought? He went on to explain ‘yes, I had it but I just stopped all the medication they offered me and just avoid chocolate!’

I’ve no idea if perhaps he misheard his diagnosis or was just generally uninformed about his illness and needs a doctor’s appointment asap-but how do you correct a man of the cloth? So I just nodded along.

What to do when people say ‘Oh, I know xxx who has that…’

In life, we often try to show a connection to things when making conversation. I’m really not sure why people tell me their third cousin has Crohn’s disease; it’s almost as if they expect everyone who has it to know each other and hang out in a secret club (with LOTS of toilets).

What do when people say ‘Oh I have that…’

And finally, when people say ‘I have that’ without any catches; it’s really hard not to say ‘Oh do you want to be my friend!’ immediately! Imagine a friend who doesn’t mind if you cancel plans and you can say ‘I need the toilet now’ to without any strange looks. On the one hand, it’s really great having someone who has the same condition as you as a friend but it comes with drawbacks too. Because even if you don’t want to it can boil down to competition and comparison. I find this is rife in the chronic illness community. If I’m talking about work, someone may reply ‘oh you must have a mild case as you can work!’ If I talk about what I eat, a reply might be ‘oh I can’t eat that!’ And of course, if you’re dealing with stomach pain/a high inflammatory marker score/frequent toilet trips, you just know somebody else has experienced double that and not batted an eyelid.

So what’s the solution? I guess I *could* just stop mentioning I have Crohn’s. I’m not sure why but it just always seems to slip out in conversation, even if I’m feeling well. It would avoid all these conundrums but it really is easier said than done!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Matt Nagin moderator
    1 day ago

    I use situations like these as an opportunity to educate people. There is indeed a lot of misinformation about Crohn’s out there and although it can be annoying to explain and correct people, it is always good to spread awareness and educate people.

  • Amanda Osowski moderator
    4 days ago

    Oh man, this resonated with me. I think misinformation and good intentions are behind some of the comments, but not enough of them!

    Thank you for sharing some ideas on how to respond 🙂

    Warmly,
    Amanda (team member)

  • Sahara Fleetwood-Beresford
    5 days ago

    “How do you correct a men of the cloth?” got me! Haha!
    I hear you! I am often annoyed by comments like this, but I don’t always have the time or patience to eduate someone, as much as I’d like them to be educated! I wish there was one fantastic IBD resource I could just send patients to, and know that they can get all the knowledge they need from it. Not that they would necessarily go to it, but I could at least feel like I’d done my bit when time is short!

    – Sahara (team member)

  • Julie Marie Palumbo moderator
    2 weeks ago

    Please do not stop mentioning that you have Crohn’s! You are doing the right thing in being honest, and may even help someone else who is (honestly) experiencing the same thing.

    I appreciate your humor in the article, as well as pointing out the obvious challenges that come with opening up to others about our disease. The classic, “Oh I thought I had it but I don’t” comment is really tricky to have a response to! (Congratulate them on their clean colon–ha!). I typically reply with, “Well you’re lucky!” and just move on.

    However, it is nice to finally find someone who has Crohn’s/UC and naturally form a friendship. I have made many friends through my local Crohn’s & Colitis Foundation who are amazing and understanding, so perhaps I got lucky in that case 🙂

    –Julie (Team Member)

  • thedancingcrohnie moderator
    2 weeks ago

    I find it frustrating when someone says “oh my sister has Crohn’s and she’s on Humira and doing excellent. She can eat whatever she wants and functions normally.”

    Then they look at my history and think I’m doing something wrong since I have been a much more “complicated” case.

    It’s a sort of shame that they try to put over you. Like you are doing something wrong since others can so easily get their Crohn’s under control.

    I typically just brush it off and say something like “i just have a complicated case, but I’m remaining hopeful.”

    Elizabeth (team member)

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